Charlie Gard: Baby with rare genetic disease died days before his first birthday

Jenny Maganran Goh, 02 Aug 2017

(L) Chris Gard, the father of critically-ill baby Charlie Gard, reads a statement next to mother Connie Yates, at the end of their case on 24 July, at the High Court in London. Photo credit: AP/Matt Dunham

As for now, all the fury and frenzy would be laid to rest – Charlie Gard had died – regrettably, just days before his first birthday. He would be buried with his favourite cuddly toy monkeys.

Indeed, his death was as disturbing as the controversial voices amidst the social media, medical circles and human activists – who called for healthcare funding and medical intervention – as well as questioning the role of the state and the rights of children.

Medical ethics have not caught up in the age of social media

The tragic case had triggered tweets from Trump and the pope in support for the baby and his parents. Just recently, US President Donald Trump tweeted that “if we can help” the boy, Charlie Gard, “we would be delighted to do so.”

A presidential spokesperson said that when Trump learned about the boy’s case, he “offered to help the family in this heartbreaking situation.”

The archbishop of Canterbury expressed his deep sympathy for the family and felt that the world could not be explained by rationality alone. Charlie’s death had evoked the memory of his own daughter, and he expressed, “I feel deeply, deeply, deeply for Charlie Gard’s parents and for all the rest of the people involved in the most tragic case.”

According to medical ethicist Arthur Caplan of Langone Medical Centre in New York University, the case shows how the medical profession is struggling to adjust to the age of social media – which puts the general public in the middle of decisions that in the past would have been private issues for doctors and the family.

“I do think that in an era of social media, it is possible to rally huge numbers of people to your cause,” said Caplan. “The medical ethics have not caught up.”

Responding to the uproar from social media, High Court Judge Nicholas Francis criticised the effects of social media and those “who know almost nothing about this case, but who feel entitled to express their opinions.”

A window of hope

Dr Michio Hirano, professor of neurology at Columbia University Medical Centre in New York, is accused of having a financial interest in the experimental therapy, which he believed could marginally help improve Charlie’s condition – with a "clinically meaningful success" around 10%.

Charlie was born with a fatal genetic condition – mitochondrial depletion syndrome (MDDS) – and suffered from severe brain damage that affected his movements.

The therapy called nucleoside bypass therapy (NBT) was offered before any prior visit to the baby, and was based on findings from laboratory tests and a small sample of patients with a different, though related, condition.

Charlie Gard dozing peacefully while the world raged on for support to save his life. Photo credit: FeatureWorld/IFLScience

In the darkest hour of Charlie’s life, the experimental therapy was a glimmer of hope, however faint it might have been. This was especially so when the doctors in Great Ormond Street Hospital (GOSH) were of the view that he should be left to die a dignified death.

The parents had appealed for that second chance to seek treatment in America and raised funds totalling more than GBP1.3 million.

The American professor, upon a request by the High Court, went to London last week to examine the 11-month-old baby and discussed the case with GOSH doctors who had described Charlie as a “terminally-ill child”.

However, when Dr Hirano, after reviewing the new MRI scan, said he could no longer help – all hopes for the baby were crushed; and the parents’ only plea was to take him home to die.

Charlie’s mother, Connie Yates said, "We promised Charlie every day we would take him home.”

“We have always paid tribute to the extraordinary courage and strength of Connie Yates and Chris Gard and their devotion to their son,” expressed a spokesperson for GOSH. “Today our hearts go out to them as they face the most difficult decision that any parent should ever have to make.”

American doctor’s intervention sparked ethical questions

The case has sparked concerns among ethicists who raised questions over the ability of medical experts to come to opinions, without fully reviewing the evidence and seeing the patient face to face.

Jonathan Montgomery, professor of health care law at University College London, said there could be a case for a judge stipulating that a medical expert must see the patient before giving their opinion in court.

“We will never know whether or not it would have changed the evidence he gave at that time. But it would give us more confidence in that evidence if he had come and examined Charlie himself,” remarked Montgomery.

In a statement issued by the doctors at GOSH, there was concern about Dr Hirano having a vested interest in the treatment he proposed for Charlie.

The doctors expressed concerns over the professor’s evidence submitted to court that Dr Hirano had neither examined Charlie nor read his latest medical records, or the opinions of experts who had seen him.

Dr Michio Hirano, Professor of Neurology at Columbia University, was seen as Chris Gard and Connie Yates’s only hope Photo credit: ColumbiaNeurology.org/Metro

The statement read, "Further, GOSH was concerned to hear the professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie.

"Devastatingly, the information obtained since 13 July gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie."

In his statement, Dr Hirano said, “I became involved in Charlie's case when I was contacted by his parents, and I subsequently agreed to speak with his doctors to discuss whether an experimental therapy being developed in my lab could provide meaningful clinical improvement in Charlie's condition.”

"As I disclosed in court on 13 July, I have relinquished and have no financial interest in the treatment being developed for Charlie's condition.”

Parents’ last wish to let Charlie die peacefully

Judge Francis ruled last week that Charlie should be transferred to a hospice and taken off life support after discussions on an end-of-life care plan between the parents and hospital failed.

Grant Armstrong, a lawyer representing Charlie's parents, said moving the 11-month-old baby to a hospice for "just a period of hours" would be "brutal".

When all doors were shut, Charlie’s parents had given up on the legal fight. All they wanted was to let Charlie die peacefully at home.

Describing him as an “absolute warrior”, Charlie’s parents, both in their 30s, made an emotional tribute.

“Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn’t save you” – his parents wrote when they announced their final decision to quit trying. “We had the chance, but we weren’t allowed to give you that chance.

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